A week from yesterday Ben will head to Johns Hopkins for his second bladder surgery. His first and only surgery to date was also a bladder correction and that was when he was four. Basically what was fixed in 2011 is back. He has a diverticulum on his bladder. From Wikipedia, a diverticulum (plural: diverticula) is the medical or biological term for an outpouching of a hollow (or a fluid-filled) structure in the body. Not only does he have this issue, but new ones have developed as well. Super! Apparently his bladder is half the size it should be for a kid his size. (Kind of like Ben in general. He’s really more like 2/3 the size he should be. Ha!). His body is also refluxing urine into his kidney. And that’s the main problem. All these things have to be fixed to protect his kidneys. Kidney damage is irreversible so we must act soon.
In 2017 Ben started experiencing a lot of UTIs. A lot. Antibiotics would clear up the problem and by the time he was done with that course of medication, another flare up would come. It was miserable. On two vacations that summer, Ben spent his days holed up in a dark hotel room refusing to go to the bathroom because of major pain, followed by a visit to vacation-urgent care. Good times.
Why does he have all this, you ask? Well, it can be summed up in one short word. Menkes. Frequent UTI’s are a common symptom for boys with Menkes and it has always been one of Ben’s biggest challenges with the disease. Unfortunately the eightish-hour surgery isn’t just over when he wakes up from the anesthesia. He will wake up with a device that will help to empty his bladder.
As you know, I am an open book our brutiful life (Doyle, 2013) is so much easier to bare when I share it with the world. Being understood is one of the biggest reasons I share our life so candidly.
But. As much as I wrap my own life up in my children’s challenges and success, it is not my life as much as it theirs. I want to respect their privacy and autonomy from their parents. I realize this blog is exactly the opposite of that. Ben is 11. He’s a Tween. He often asks when I take pictures, “are you Facebooking that?!” Usually I say yes and he blushes. But I don’t want to share more than he feels comfortable with. I don’t want to embarrass him. So while I will share, know I’m also trying to be considerately candid and also quiet for his sake. I’ll try to balance it as best as I am able…and not be “that mom.”
So. On Wednesday 2/13/19, Ben will have a real-long surgery. Eight hours at least. We will come prepared with Netflix and books and magazines and patience. When he is finished, he will be in the ICU for a couple of nights because of the nature of the surgery and his disease. Then, we will spend a week, as long as all goes to plan, at Johns Hopkins. We are used to this sadly. But happily we know what to expect, how to pack and how grueling hospital life can be. I like to be prepared. I like a plan. I HATE when the plan doesn’t go as, well, planned. But no plan and no experience brings even more anxiety. We have arranged sitters for Kelsey, received offers for care for Teddy (our new dog!), and volunteers for school events. We have care packages for Ben, Valentine presents and activities and DVDs packed for the long days. After we come home, Ben will have a long recovery. He will likely miss six weeks of school (seems to be the requisite surgery recovery period–six weeks)!! He’s happy about it now but I’m sure he will be ready to get back to a normal routine–you know I will!! Take the wheel, Jesus!
Until then, Ben has a big weekend of spoiling ahead. That’s the first thing he asked when we told him about the surgery–“Will I get spoiled?” Yes you will, my love!! He’s going to the movies on Saturday with some friends, having a family Valentine’s party on Sunday and pretty much getting whatever he’s asked for between now and then.
Currently he knows about having surgery, “like when he was four.” But that’s it. The surgery and recovery and lasting functions are more than we’ve let onto with him to protect his sweet heart from worry. We will tell him this weekend when it seems right.
What he is having done is not for the light of heart. Or the weak of mind or body. I feel comforted (and also saddened) by the fact that Ben is currently doing so well. He is so strong. He is so smart and brave and kind and pleasant and wonderful. This year he has matured in so many ways. Fifth grade has really been a delight and I’m sad he will miss so much. Last month we went to Florida for a warm winter getaway. Ben walked the entire airport and a large beach resort. He didn’t tire. He didn’t complain and didn’t need assistance. He was robust and strong and abled-bodied. He pulled his own suitcase!!!! This is huge in the Menkes world. It was amazing to watch…and also experience because we need someone else towing the line with our Kelsey in the mix.
I’m sure when you hear from me in the spring I’ll be praising Ben’s handling of all of this. He always handles his stuff better than I do. I obsess over the plan. Over people’s impressions and reactions to my actions, appearance and entire self. Always have. Always will. Therefore I obsess over people’s impressions and reactions to my kids. This is definitely one way this parenting life has taught me something. As our dear Taylor Swift tells us, “Shake it off!” Ben does and will, God willing. He does not sweat the small stuff and has a very high opinion of his cute self. Praise the Lord!
We will be ok, this I know. But it’s just one more example of how our family has to “embrace the suck.” I am currently reading Sheryl Sandburg (COO of Facebook) and Adam Grant’s book, Option B (2017), which describes her experience of losing her husband. She says,
“Just weeks after losing Dave, I was talking to (my friend) Phil about a father-child activity. We came up with a plan for someone to fill in for Dave. I cried to Phil, “But I want Dave.” He put his arm around me and said, “option A is not available. So let’s just kick the shit out of Option B.” Life is never perfect. We all live some form of Option B. This book is to help us all kick the shit out of it.”
So, once again this little Larrick Family will kick the shit of Option B.
Thanks for your prayers.
P.S. Â Kelsey update–She’s doing great! Just as one goes “down” the other goes “up.” Four months after her most catastrophic seizure yet, most all of her left arm function has returned since my last couple of posts. She can use her regular walker normally. I have never been more thankful for her independence with the use of the walker that we, at one point, despised. Now this isn’t to say that the last four months have been easy. They haven’t. Kelsey needed help with E.V.E.R.Y.T.H.I.N.G. It was like having a 40 pound infant around. But after eleven and a half years of parenting medically fragile children, we have learned that things tend to settle themselves. We had to be really patient and, don’t get me wrong, we were really worried and depressed with our current lot, but her arm function has come back and we are approaching our normal…just as we are about to shake things up again. Life is a real roller coaster, ain’t it?? Sheesh.
P.S.S. My blog website/format has been on the fritz and this is the tenth time I’ve typed this so forgive me for errors and lack of cute pictures. Ta-ta!